INDIANAPOLIS — February is Congenital Heart Defect awareness month and WRTV introduces you to a family who had no idea when their son was born, they would join a community of heart parents.
“On September 2 we were expecting to deliver a completely healthy baby boy,” said Megan Ely.
She and her husband Ryan said when their son Lincoln was born they knew something wasn’t right.
“His fingers were blue, he was cold to the touch, he just didn’t open his eyes, he didn't cry; everything was just a little bit different,” said Megan.
They said doctors spent a week trying to determine why their son wasn’t thriving when finally a nurse suggested Lincoln might have a heart defect.
“We decided to get the pediatric cardiologist to come visit him in the NICU and they determined that he had a major heart defect. Tetralogy of Fallot,” said Megan.
Because of COVID restrictions, Megan was alone when she found out her son would soon have to have open-heart surgery.
“Open heart surgery for an infant, that was unimaginable to me. It was killing me just to see him in the NICU, but to hear that he was going to have to experience such a major surgery at such a young age was just — it was shocking to hear that,” said Megan.
Megan said she learned a lot about heart defects in the days after his diagnosis and found that they are the leading birth defect in the world and her heart went out to all the parents she now knew were experiencing the same thing.
“I can't believe it that many mothers have to experience this,” said Megan.
Lincoln had to have his open-heart surgery when he just one month old, the Ely’s tell me he was just 9 pounds.
“I just cannot say enough about how resilient babies are there they're just incredible he has just been through so much and now at five months old he's totally thriving it's as if it never happened,” said Megan.
As February is national CHD awareness month, the Ely’s have this advice for any parents experiencing the same thing.
“Just be strong. You are the strongest person for your child, and you have to just find the positive in this situation and just rely on the fact that medicine has come such a long way guide there is so much that they can do for these babies,” said Megan.
“Ask the question child but also help you work through it and i think that's pretty important to kind of getting your understanding of what's about to happen to your child before the surgery then also after,” said Ryan Ely.
Megan also says as a mom don’t be ashamed of the diagnosis, there is nothing you could have done to cause or prevent a heart defect from happening to your child.